We made it to Boston!!

Juliana made it to Boston and is getting to know everyone. Well actually they are getting to know her. You could tell she knew she was not at the same hospital. She had a little fit when she woke up from her sedation, but was able to settle down and fall back to sleep after I swaddled her. She will start on the Omegaven on Friday, so for now she remains on the TPN with regular soybean oil lipids. It's been a hard week for me as I haven't seen her in 2 days and won't see her til tomorrow night.

The nurses have been great. They seem to really listen when I talk to them about Juliana and her care and medical treatment. After three months of life Juliana has developed some real likes and dislikes. She responds well to some treatments and not so well to others, so it's important to make everyone aware of what works and doesn't work with her. The doctors still haven't made any real decision regarding her ostomies and reanostomosis as they are still getting to know her also. Hopefully within the next week we will have a plan in place. Please continue to pray for Juliana and her recovery.

Saying goodbye is sooooo Hard

It's wonderful that Juliana is able to go to Children's Hospital Boston, but terrible that we have to leave so many new friends who are almost like family to us. I think this is the hardest part about preparing to leave. We have become so attached to many of the nurses and doctors at Yale. I can actually sleep at night knowing that she is in such caring hands. As the week goes on we continue to have to say our goodbyes to so many nurses that have been there through many storms and allowed me to cry on their shoulders. Even if they have only actually had Juliana as a patient once or twice they continue to check up on her and come visit her to say hello. It's been a very emotional week for us but I know it's for the best.

Juliana has been at a stand still for the moment. She is just hanging out in her crib day to day with out very many changes. Her oxygen requirement continues to fluctuate but her vent settings have remained the same. I am hoping that Boston will be able to help Juliana get back to feeding again and with the magic of omegaven repair her liver that is continuing to deteriorate day by day. I am still hoping to have Juliana home for Christmas, but as long as she is getting better I can deal with spending Christmas in the hospital.

Please continue to pray that Juliana has a safe trip up to Boston (her first time ever leaving the hospital), and that her liver will make a speedy recovery while her intestines heal and begin to gain function. She needs to eat and be able to absorb her nutrition through her intestinal system before she can come off of the TPN and eventually come home (or at least to Connecticut).

Going to Boston

As you know Juliana has had some gut issues over the last month and half. She has not been tolerating her feeds and has been receiving a nutrition packet her whole life to ensure that she is getting the nutrients, vitamins and fats she needs to thrive and grow. Although this is meant to benefit her at the same time it is hurting her and the longer she is on it the more damage is done to her liver. Her liver is in really bad shape right now and is not going to get any better if things continue the way they are. Fortunately the Children's Hospital Boston has a great program that has been saving children's lives and livers. They are giving a special nutrition packet that contains fish oils. These oils replace the lipids (fatty acids) that are given with the TPN. Her liver will not heal over night but with time her liver will stop deteriorating and eventually improve. Her reanostomosis is not scheduled for another 3 weeks. So we anticipate that she will remain in Boston for at least a couple of months. After her intestines are reconnected she will need recovery time and then will have to build up her feeds to the point were she can come of of the TPN. The goal is to keep her on the fish oil program till she is at full feeds and no longer using the TPN.

I know this all sounds great for Juliana and it is. It is going to be very hard to only see her on weekends. I have been at her bedside everyday (except for one day when I was battling a fever) and to think that she will spend four days a week without her family is terrible news to me. Juliana is stronger than all of us and I know she will do just fine. I am really trying to think of it as just a couple of months out of her long life that we will share together.

Please keep us in your prayers because the battle is not over yet. We have come a long way but still have a long way to go.

4 Weeks!!

In four weeks the surgeons are planning to reverse Juliana's ostomies and reconnect her intestines. Of course we will have to start from the ground up again on feeds and she may still have some other lung issues to deal, but I am hoping to have her home by Christmas. She has been doing very well over the past week. She remains on NIPPV and seems very comfortable with it. There haven't been many changes on her vent settings which is fine. She is loving the crib life and surprisingly can sleep very well with all the noise in the room. I was concerned she would not be able to adjust to all the noises that she didn't hear while in the isolette, but she is just fine. I still have not really heard her voice yet as she is still quite hoarse from all the weeks of intubation. Her feeds have been great and we are now seeing stool from her colostomy bag and her rectum. Her eye exam went very well yesterday and her condition is improving. She is doing everything she is supposed to do at this point. We just have to wait four weeks for surgery and take it from there. I am so proud of her.

Big Girl Crib!!!

Happy Birthday!!!! Juliana is 3 months old now and for her birthday she graduated to a big girl crib. At 3lb 9.6oz they feel she is big enough and old enough to try out the crib. She had been set at crib conditions in her isolette for most of the day and was able to maintain her temperature. We will also have to watch to be sure she doesn't loose any weight. We don't want her to use too many calories trying to stay warm.

On Friday she went down to the OR to be seen by the ENT specialist. He took a look with a microscope at her airway with the hopes of extubating her again. She is extubated now and the ENT feels that she doesn't need a trach at this point although it is still an option. She shows no signs of subglottic stenosis (narrowing of the airway) and her vocal chords look great. This is more than we could have asked for. She seems very comfortable with the NIPPV and her new crib.

The plan for now is to continue with feeds through her feeding tube right now of 1cc per hour continuous and and then refeeding the contents of her ostomy bag in to the right stoma. To date we have not seen any stools from her rectum, but I am sure she will leave us some poopies soon. This will continue untill the surgeons feel she is ready to have her intestines put back together.

Please continue to pray for Juliana. All of your prays are so appreciated and definitely in need.

Juliana has been very stable over the last week. She had her first eye exam since the surgery and her condition remains the same. We won't actually see any real results for about 3 weeks when the scar tissue starts to form. It's really good that there has been no change as her condition was progressing very quickly. She is scheduled for another check up today or tomorrow and the retina specialist will continue to follow up with her over the next two months.

Now back to her respiratory status. Juliana had to be re- intubated for her eye surgery and the intubatation was very "traumatic" according to the doctors. It seems that her air way is a bit swollen which made intubation very difficult. She still needs to have at least one more surgery where the surgeons will reconnect her intestines and reverse the ostomy. This won't happen for at least another 5 weeks. So the concern is that she will need to be re-intubated for that procedure and may also have some trouble if she is extubated now and then re-intubate later for that surgery. It's not ideal to leave her intubated until that time comes. So the plan is to start her on a short course of steroids to bring down any superficial swelling in her airway and extubate her tomorrow in the O.R. where the ENT specialist will be able to thoroughly exam her airway. If he finds that her airway is okay and shows no sign of Subglottic Stenosis (narrowing of the airway) then she will be extubated. If he feels that she is showing signs of Subglottic Stenosis then she will be re-intubated right there and a tracheotomy will be scheduled. The trach will actually give her more time to heal with out having to be intubated. She will have use of her mouth again and will still be able to get the ventilator support she needs.

Juliana is back on feeds again and is getting 1/2cc (like 1/2tsp) every hour continuous. Now I know this is going to sound gross but if it works it works. The plan is to take whatever output she gets in her colostomy bag and re feed it through a feeding tube placed in her second ostomy. This is offering the chance for her to better absorb the nutrition she needs from her feeds. She will still remain on her iv fluids because at this point it's really hard to measure what she is actually absorbing from her feeds and also because she is receiving such a small amount. Hope fully this will work for her till the surgeons feel she is ready to be "put back together".

Thank you as always for your prayers. Juliana is doing very well compared to where we were 3 months ago. She has gained quite a bit of weight and is now 1600 grams or 3lb 8 oz. I will try to post again in a couple of days, but as you know my life is very busy right now.

Another Surgery

I thought we were free and clear and on our way to recovery. Well that turned out to be false. Juliana had another eye exam yesterday and it turns out the in a weeks time stage 1 ROP (retinopathy of prematurity) progressed to stage 3. She will have laser eye surgery tomorrow. Hopefully this will begin to repair the the blood vessels in her eyes and save what ever retina she has. She will most likely need glasses but will hopefully not be blind. This surgery will lessen her chances of retina detachment from 95% to 20%. So, there is still a chance that the scar tissue from the surgery may become elasticized and pull on the retina. As always we hope for the best for Juliana. Fortunately the eye doctor was able to catch the ROP and PLUS disease at it's begining stage so she has the best chance of recovery if the surgery is done now.

Last Friday she had an upper g i test which went very well. For this test the surgeons put some barium into her stomach so they can see better in an xray if there are any blockage or breaks in the intestine. Everything looked fine so she started feeds of 1/2 cc per hour continuous and increased by a 1/2 cc per day up until yesterday. She started doing what they call dumping. This means that whatever is going in is coming out with out being processed or absorbed by the stomach and the intestine during digestion. Her output continued to increase so her feeds were stopped again and blood and urine cultures were drawn to determine if she is septic again. This was just done overnight so it will be a couple days before we can rule out infection as a casue of her dumping. I don't know what the next step will be if she is not septic. At this point my main concern is getting through the laser eye surgery with out complication.

Please continue to pray for Juliana. As you can see the battle is not over yet, but we coninue to fight.